Spoonful of Spoonie Encouragment

Mornings for those with a chronic illness are a struggle beyond words. Waking up and willing our bodies to function is a fight. Here is a spoonful of encouragement for spoonie warriors. Happy Monday, brave friend!

You have victoriously made it out of bed this morning. The symptoms and pain are already overwhelming, but you’ve got this. You only need to take today one minute at a time. You have all the strength you need, even though it might not seem that way. Anxiety and depression attempt to dictate your day. Take a breath. Take a break.  Get some rest. Keep fighting to make today the best day possible.

You have been chosen to walk this path. It is one filled with heartbreak, disappointment, and setbacks. Walking the path of someone who is chronically ill is a challenge to say the very least. Being sick has most likely disrupted your flawless rhythm with life. It has stopped you dead in your tracks. Your illness has tried to toss your dreams out the window.

Though this path is difficult, I assure you there is a lot of beauty to be discovered. Sure life is not what it used to be, but the song you sing is just as beautiful. There is hope, joy, love, laughter, and life to be found on this path. You will be able to recreate your wonderful dreams. You are still you, despite your illness. You are an amazing and beautiful person with a flawless story and a huge purpose.

    There will be days that you become overwhelmed and feel completely alone. Your feelings are understandable, however, I promise you, you do not walk alone on this path. There are people who care about you, people who understand how difficult the journey is, and people who want to support you.

I am proud of all you have accomplished. I know you will thrive today. This week will be lovely simply because it is the only choice. While you don’t need to be positive all the time you need to take baby steps forward. You are doing amazing. Raise your coffee (or tea) to a great week warrior!

Stillness In the Invisible Fight

Chaos, one word to sum up the invisible fight. There are always phone calls to be made, medical testing, prescriptions to be filled, and doctors to see. And that is only the tip of the ice burg.The invisible fight is draining physically, emotionally, and spirituality. It demands all we’ve got and more. Sucking the spoons right out of our grasp. On top of the daunting tasks embed in chronic illness we attempt to be as normal as possible adding school, work, food shopping, and social events. It is a full time job.

There never seems to be a dull moment. We have become accustom to fighting, it is not a choice it is something we must do in order to survive. Accustom to the demands of this life. We fight against invisible illness, for tests to be run, with insurance companies, and to receive proper treatment. Our defenses are up. We attempt to be strong for those around us. Pretending we don’t need any support. We are weary yet dressed in a warriors optimistic attitude we continue to fight another round.

“The Lord will fight for you, you need only to be still.” Exodus 14:14

Finding stillness in the mists of the fight seems impossible. Putting our to do list aside and quiet our minds we can enter into the presence of the Lord.The Lord is a flawless example of a warrior. He has fought for his children restlessly providing a picture of his love that is beyond words, beyond human comprehension. We can confidently surrender our invisible fight into His sovereign hands. The Lord understands every aspect of our invisible fight. He will support us, substation us, provide for us, and fight for us. The only thing we need to do is be still and trust in Him.

How do you find stillness in the invisible fight?

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My Invisible Fight

If you know me, you know I am chronically ill. My illness does not define who I am but it is a part of me. I look at as a trait not necessarily positive or negative. Like having brow hair, an oval face, or having dimples. My invisible fight. Words that empower. Words that inspire. Words that sum up my life over the past few years.

Without a doubt I have become a fighter, in this invisible fight. Few people know the details of my fight. Chronic illness is much more than what is seen on the surface. The battle is within. Falling apart only behind closed doors.

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I had many encounters with terrible doctors. No one took me seriously (I still struggle with this today). Doctors downplayed any concerns. My mom was my advocate, my voice. Growing up I was dangerously shy. If someone were to look at me crossed I would shrink back into my shell. Hearing my middle name released a waterfall of tears. Speaking up, was terrifying for me. Gradually I began to find my voice and become my own advocate. I have educated myself on treatment options, my illnesses, and everything medical that is relevant. I have learned that I know my body and my illnesses better than any doctor. After all I am the one who lives with it every moment of every day.  I fought to find my voice. My mom and I fought to find good doctors.

My health began to spin out of control in high school. It became evident that something was really wrong. Little by little new symptoms would develop. A new rash, unbearable pain, sun sensitivity, collapsing, weight loss, hair loss, and that was only the beginning. Medical testing became the norm of my life. Blood work that included more than thirty tubes of blood, MRIs, x-rays, GI studies, CATSCANS, scopes, EKGs, EEGS, and other medical tests that I cannot recall the names to. In addition, I had five operations in high school. The operations ranged from removing my tonsils to removing cysts to explority surgery.I thought I had hit rock bottom my junior year of high school, after an encounter with a medication that caused seizures. Little did I know rock bottom was much further down. Little did I know that I would long to go back to those high school years and deal with that pain and those symptoms.

I felt like the pause button has been hit one too many times. I have been home bound many times over the past six or so years. Every time play was hit and I began to recover, get stronger, and move forward pause would be hit yet again. It seems like each time my life is put on pause gets longer and finding the play button becomes more difficult. 

My invisible fight was taken to a new level in college first due to pluricy. Then to finding bloody urine that indicated a sever double kidney infection lasting four months. I was taken off my Lupus medication which gave Lupus permission to recklessly attack. I began seeing doctors every few days, had medical testing weekly, and became a regular at urgent care. I landed myself in the cardic unit last September. I continued to get worse. More testing. More doctors. More pain. Hopeless.

My symptoms shifted. My abdomen began to give me issues again. This time it was worse. Abdominal swelling to the point of looking at least six months pregnant was my newest symptom.  I began to question how much more my body could take. How many more days of intense pain that sent me to bed screaming and doubling over. I was taped. Giving in to the fight was tempting. No one had answers. No one knew what to do.

Things were terrible. Eating was difficult and staying hydrated was nearly impossible. The fatigue was thick yet my body wouldn’t surrender to sleep. I had to rest going up or down the stairs. Breathing was a chore. Shower a hazard. Daily tasks seemed like huge projects. Some days I couldn’t bend down to put on my own socks.

Finally it happened. This past April, I hit rock bottom. I could barely move. The pain and fatigue were more intense than I can describe. I was admitted to the hospital for ten days. https://chronicallyhopeful2014.wordpress.com/2015/05/02/hospitalization/

Looking back I believe that being admitted was the best thing for my health overall. I was at rock bottom. It was more difficult to keep moving forward than I can describe.

When I received the message on Chronically Hopeful inviting me to help and participate in Invisible Illness Awareness week I was shocked and over joyed. I firmly believe that sharing our invisible fight stories is vital. Someone had shared the fight song. I immediately connected with it and shortly after fell in love with the lyrics. I feel like that is where I am in my invisible fight, taking back my life. Taking back life after dramatic pauses is difficult. At times it is painfully slow. Progress seems invisible.  Taking back my life and continuing to fight is a daily decision and struggle. I am mastering a new balance act with my invisible fight and the rest of my life.

My invisible fight has probably been the most difficult fight of my life. I know it will continue to be a tough fight. It has caused me physical pain, heartbreak, taken me on an emotional roller coaster, played tug a war with my faith, caused me to lose friends, and lose much more. Yes, there are countless negative attributions of my invisible fight, but I am sincerely and deeply grateful to be in this fight. First of all I am grateful because I believe that God will use my invisible fight for his glory. Through my invisible fight I have matured as a person and as a Christian. I have learned so much. I have meet some of the most inspiring people. I have had the honor of running Chronically Hopeful and helping with the Invisible Illness Awareness Campaign. My prayer is that my invisible fight will be a testomy, inspiration, and blessing to others.

Psalms 32:7

“For you are my hiding place; you protect me from trouble. You surround me with songs of victory.” Psalms 32:7

There are days living in the Spoonie world is difficult. Thick anxiety is layered within. Fear of those two heavy words.. what if. There have been an abundance of moments on this journey where I wanted to hide. Like a timid child hidden from the melody of an intimidating thunder-storm.

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When we were children, we didn’t just hide out of fear. Hiding provided entertainment and excitement. The anticipation of being found remains unwavering. However addition positive emotions associated with hiding have melted with age. Negative slush traps us.

Hiding provides an escape. For even a moment I would like to escape the burdens of the Spoonie world; the doctors, medication, testing, emotions… the burden of being a spoonie.

This verse reminds us of our ideal hiding place, which is the Lord. In the mists of chaos and struggles we can crawl into the Lords compassionate arms. He is our hiding place. He is the source of all we need; our everything.

The Lord knows everything; his understanding is unhindered. He spares us from countless tragedies. He gently guides us through each storm.

There is a blissful victory in Jesus. He allows each moment of our lives to work together and bring Him glory. Though I may walk through the valley of the shadow of death melting from the negativity within I know somehow the Lord will receive glory. There are many things I do not understand. But I refuse to allow the burdens of the spoonie life to hinder my faith. Despite it all I will praise the Lord. With a heart of gratitude and wonder I will thank the Lord for my struggles. For he will receive glory and victory. Blessings are woven into this season. He will transform it into a master piece. It will be used for something beautiful.

“Nothing in your life has happened by chance. You are here exactly at this moment in history with exactly the circumstance you have encountered because God has a specific task he wants you to fill.”  The Lord has an astonishing purpose for your life. He will use every negative thing for good, to encourage others. Keep faith. When you cannot take another step, rest in the sovereign arms of God.

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Prednisone Part Three

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The many side effects of prednisone complicates our already mixed up lives. Coping with them can present challenges. I am here to share a few simple tips of coping with prednisone side effects.

Humor is helps me cope with being chronically ill. Someone once said, “If you’re not laughing, you’re crying.” And as we all know laughter is the best medication. I have always had a unique sense of humor. You either understand my jokes and find me funny or you just think I’m weird- well either way you might think I’m weird. Prednisone is easy to make fun of, which is why countless do so in the online spoonie world. From pictures to songs prednisone humor is plentiful. I feel humor helps us find a sense of normalcy in the chaos of illness.

I love to talk. Some times I just talk even if there is nothing to talk about, endlessly blabbering. Talking is a great way to cope with the emotional monster chained up inside of you from prednisone. Family and friends provide support that cannot be put into words, so priceless and beautiful. In addition to their vital and irreplaceable support, I recommend finding a prednisone support group. I am a huge fan, overall of online support groups. Connecting with other spoonies gives you a different perspective, inspiration, and support in a unique way.

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Are you on prednisone? Have you meet the emotional terror monsters evil twin… Cravings? If not you can receive your prednisone cravings and out of control hunger for free.

Hunger and cravings are another monster of prednisone. I don’t know about other people, but most times I do not get truly hungry, I just feel like eating or have cravings. Either way it is another obstacle for many. I face the obstacle of not having many things I can eat therefore I give into my cravings about 90% of the time. I do not recommend this what so ever, I know it’s not the best habit to be in. You already know that you need to eat healthy. It is more important now being on prednisone. The way your body is processing and absorbing food is different then your normal. For example you need to make sure to get enough calcium, potassium, and vitamin D. Lower the amount of sodium you eat. Find foods that are healthy and filling. Of course plenty of water is a must.

How do you cope with Prednisone?

Prednisone: Part Two

Prednisone: Part Two: My Experience

I have been off and on Prednisone for about a year and eight months. The majority of the time I was on a low doses, less than 20 mg. My first round was a two-week quick taper for pleurisy. I did amazing and felt great. The only down side was I was moody. I cried a lot and had anxiety.

I was put back on a low dose for Lupus. I experienced different side effects which included moodiness, moon face being a neat freak, and some insomnia. My doctor attempted to taper me, but at the time I had a sever kidney infection. Tapering off of Prednisone while flaring is not an easy task. I was later informed that Prednisone was the only thing that kept me out of the hospital. Though I was in Urgent Care every day to every few days for IV antibiotics. In addition to the lovely infection that made itself at home in both of my kidneys, I also had a surplus of kidney stones.

Some doctors enjoy playing the lets diagnose you again game, which for the record I am not a fan of. I was taken off all of my medication and my body went hay wire. After a few weeks I tried to get in to see my doctor but was denied an appointment. A Fibro doctor I had been seeing, who ruled out Fibro, helped me get in with a new doctor. I was diagnosed for the eighth time with Lupus. Along with my other Lupus medication I began a low dose of Prednisone and Benlysta. My doctor attempted to trapper me, but my body thew a fit every time. I was able to get down to five mg.

In the hospital the doctors tried every medication they could think of. When nothing helped they began discussing the possibility of increasing the Prednisone. After days of no improvement, many debates among the doctors, and discussions I was put on 60 mg of Prednisone. The relief was almost immediate. The one doctor was shocked how well and quickly my body responded. The plan was to do a five mg taper for a month then follow-up with the gastro.

I had gotten down to about 50 mg, with no additional Lupus meds other than Plaquenil. I woke up a Monday morning at four am. My pain was intense, close to breaking the pain scale. I tried to use the bathroom, bending was terrible. I felt like my keens were going to break from the amount of pressure and pain. I tried icy hot and triger balm. I attempted to lay back down, but couldn’t. It hurt to sit just as much. The pain in my joints and abdomen was terrible beyond words. Around six am I went to my mom, I couldn’t breathe the pain was so intense. I called the on call doctor who was no help at all. Hours later after a few more phone calls I was fit into the doctors schedule. She increased my Prednisone to 60 mg.

It’s been about a month. This is the longest I have been on this high of a dose. I still have difficult days but the pain has greatly improved. My moon face seems to grow daily. It’s gone from assisting me in looking healthy to, “What  happened to your face?”. Yes people do ask that. I have gained weight. Though now I am close to what I should t I am self conscious about the weight gain. That probably sounds weird. I have grown accustom to being under weight. I do have some insomnia and weakness, I would love to blame it on the Prednisone, but I am not convinced it is the Prednisone. Overall, my body responds well to Prednisone, almost too well. I am extremely grateful for the relief and assistance it provides. I look forward to getting off of Prednisone. However, I also dread tapering. Personally, I believe it will go much smoother if my treatment plan is tweaked.

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Share your experience with Prednisone.

Just a Drop of Encouragement

Having an optimistic outlook is wonderful. It will not cure anything, but it helps us cope with many things. Surround yourself with people who are uplifting. It is okay to not be optimistic every second of everyday. Allow yourself to feel other emotions. It is okay to be angry, to be overwhelmed, to be stressed, to be sad, to be confused, and to be negative. It is okay to scream and cry. It is okay to have a pity party. Though it is okay, even healthy, do not allow yourself to stay in that negative state of mind. Once you are done with the negativity, pick up your boxing gloves and be ready to fight. To fight for your health, your happiness… To fight for you. You are worth fighting for. Your life is beautiful. You are a warrior. You are a survivor.

The Lord will provide for you emotionally, physically, and spiritually. He will provide just enough at times, this way you can move forward. He meets your ever need. The Lord has blessed you greatly. He has blessed you beyond your understanding and knowledge. He will continue to pour out his blessings in your life, for all of your days. You are flawed and facing unfair struggles but you are so blessed. You have countless things to be grateful for. Let gratitude fill your heart and mind. Allow your heart to sing with thanksgiving.